TTTS - VERY SCARED AND GOOGLING LIKE MAD

(42 Posts)

Hi, well this pregnancy hasnt been great so farhmm, Ive done my back in, had a SCH, Hyperemisis and 2 bouts of dehydration along with the usual pain in the arse parts of pregnancy smile anyway I am (today) 17+5 pregnant with my (now confirmed) identical twins (mcda) with the bad news that It looks like one of the babies (baby A) isnt doing so well, It looks like it is at least a week behind and has a lot less amniotic fluid than the other baby. so I am being sent to Princess Anne Hospital in southampton to basically confirm my hospitals suspicions, I will be watched for god knows how long then i suspect referred to Kings, in London to have Laser Ablation and I am absolutely PETRIFIED. like most people I have been abusing using Dr Google and frightening myself silly. I downloaded a pdf basically explaining the procedure but even just thinking about it now makes me feel very weepy and the head midwife I spoke to today was nice but very blunt (which would normally make me feel....not better but at least as if I were being told the truth, but the only thing it did was make me feel like I had been kicked in the stomach...scuse the pun)
is there anyone out there who can offer advice, a word of comfort? I know there are other ttts chats but, well i feel a little selfish today.
i also have a few questions to ask
1. what should I ask the consultant tomorrow?

thats about all the questions I can think to ask at the moment sorry but my mind is racing!

Many thanks in advance

Foxtailsoup Wed 14-Nov-12 14:25:57

KRM I don't have any words that will help, but wanted to say that I saw your new message and am thinking of you and your family. Life is impossibly hard sometimes. Someone said to me once that grieving is like being battered by the waves out at sea, you just have to trust that they'll wash you into the shore eventually. x

Just realised there isn't a 31st this month. I feel even more silly.

On 31/11/12 it will be exactly 6 months since this happened. Where has all this time gone?? My heart is still completely broken

X

silverangel Wed 06-Jun-12 08:53:35

I am so sorry to hear that Stanley and Nathan didn't make it. I hope you and your family have good support in RL. Thinking of you all xxx

dubz Tue 05-Jun-12 22:40:49

I have noticed the thread title before but for the first time tonight read your posts. I'm so sorry to hear such sad news. My heart goes out to you and your family. I have no words of wisdom to offer, but there are some lovely supportive people on the berveamnet threads who might offer some experience and practical support.
much love to Stanley and Nathan, may they rest in peace

Cerubina Tue 05-Jun-12 21:31:53

Oh Kate, I'm just so, so sorry to read this. I can't imagine how you and your OH feel but it must be total devastation to lose your lovely boys in this way. I am never good with words in such situations, but I do hope that you are getting all the help and support you need to get through these dark days and that future times hold much more happiness for you. I can never believe life can be so cruel as when people lose their much-wanted babies. The hospital doesn't sound as if it responded appropriately??

Love and prayers for you and your beautiful, precious boys Nathan and Stanley. Xx

LackaDAISYcal Mon 04-Jun-12 00:22:49

So sorry to hear about your tragic news sad

This is a donation site for s.a.n.d.s in memory of my beautiful boys
Feel free to donate if you wish

http://www.justgiving.com/twinsnathanandstanleyborntoosoon

twinnies26 Sun 03-Jun-12 11:59:29

Oh Kate i haven't logged on in ages and was scanning through the posts i've missed and then saw your tragic news. I'm so sad for you, i can't imagine what you are going through. It was my greatest fear for 4months, i'm just so sad to read this awful news sad You and your family will be in our prayers tonight. xxx

weblette Sat 02-Jun-12 21:51:02

Kate, so sorry to hear about your beautiful boys - what lovely names. Wishing you peace x

londonmum123 Sat 02-Jun-12 21:41:44

Hello Kate,

I'm so so sorry to hear your news. I cannot begin to imagine how you are feeling and I wish I could say something to offer some support.

Thank you for coming back on here and letting us know about Nathan and Stanley. My thoughts are with you and your family.

Xxx

Albaba Sat 02-Jun-12 15:13:45

Hi Kate, I have just read your post and wish to offer my sincere condolences to you and your family. I have being following your posts with interest having been in a similar situation myself last year. It was looking so positive after you had the surgery so I was gutted to read your post today. I know it's only words but I am really sorry and my thoughts are with you.

frankie4 Sat 02-Jun-12 11:36:56

So sorry to hear about your devastating loss of Nathan and Stanley. I have nothing useful to say to you, but I wish you all the strength to get through the cremation and to start rebuilding your life. Hope you haves lots of future happiness and they will never be forgotten. Xx

Just so that you know, unfortunately on 25/5/12 my waters broke and I wasn't admitted to the antenatal department (for whatever reason) until 28/5/12. They initially thought that there was a chance that my waters could repair with strict bedrest but unfortunately it was too late. We went down for a scan 30/5/12 and we were told that our little baby (Nathan) had no chance at all being born at this gestation and our bigger baby (Stanley) (we changed their names) had heart failure.
Labour had to be induced, 31/5/12 and it lasted 5 and a half hours. Nathan was born first at 8:11pm Stanley at 8:40, they were both born sleeping.
We are having a cremation for them soon and I am planning on doing something to help ttts charities, but I have no idea what at the moment as it is still so raw.

Im sorry I have had to put this up here but if this post can help anyone then it will help me to feel a little better.

Nathan Jarett Redford
Birth time: 20:11
Weight: 340g
Length: 25cm
HC: 15cm
Gestational age: 22 weeks + 2 days

Stanley Christopher Redford
Birth time: 20:40
Weight: 420g
Length: 27cm
HC: 17cm
Gestational age: 22 weeks + 2 days.

londonmum123 Wed 23-May-12 20:35:11

Hello again, I'm thrilled the surgery went well and both babies survived. That is such fantastic news - it's made me well up. Thanks so much for the update.

I'm not surprised you are feeling all out of sorts, you haven't had the easiest pregnancy (bit of an understatement). Fingers crossed that the rest of your pregnancy goes smoothly - it sounds like your little ones are fighters. All the best and please keep us updated xx

Also, completely forgot hellswelshy and twinnies26, what kind of dressing did you have over your wound? How long before you were healed? I am really paranoid about it and I keep thinking there is a huge hole (under the star shaped dressing) that I could touch the babies through. I have been cleaning around it with cooled boiled water so far.

Thank you Cerubina x I feel really out of sorts and like I can't really "enjoy" this pregnancy which is really annoying because I look like I am about 40 wks pregnant (with one) and when people come up to me and say "you look like you're about to pop" and I have to explain everything (ie no I have "20 weeks" left) I just cry, I feel bad for thinking of names, even for laughing sometimes and we haven't even really got anything for the babies yet, just 2 cute little 5 pieces because of all the uncertainty, both of our families are on edge and we have a 2 1/2 year old who doesn't know which way is up. I know that the outlook at the moment is fairly positive and I am desperately trying but it's always at the back of my mind and you can't hide a huge bump from people. Sorry I had to get that off my chest X

Cerubina Wed 23-May-12 19:23:25

Didn't want to read and not post - so glad to hear that initial response to the ablation looks so positive and hope this continues. Poor little ones and you, it must be so scary and feel really out of control! I met Dr Basky just once when we went in for a scan with ours but he was great and glad to hear that he's done such a great job with you. Fingers crossed for a very smooth remainder of your pregnancy xx

Also, as soon as prof. Basky was finished with my surgery he was off to Sweden to talk about my case of ttts (and others) but he had already written the report saying that the babies had survived the surgery. He really really is a brilliant man. Obviously our little baby still may be affected by the intra uterine growth restriction but because of this surgery prof. Basky believes that this should "help" somewhat. Anyway, hope this has kept you guys updated, if you have any questions don't hesitate to send me a question. X

Hi all, sorry I haven't been on this thread but we have had a bad couple of days. I went for my weekly scan on the 18th and my little baby (baby a) was completely stuck to the walls with no bladder function. Unfortunately, the only appointment available to do anything was this Monday just gone (21st). I had a scan again and they said that I would need to have the laser ablation surgery (kind of new this anyway) the next morning. Got booked into ingleby house on the grounds of st Georges hospital and prepared for the worst. Our op time was booked at 8:30 with the brilliant Prof Basky performing the surgery. Everything surgery wise went extremely well even though it was the strangest thing either me or my husband have ever been through and the laser "popping" inside my belly was worrying and weird. The only good part of the op was that we got to see one of the baby's backs and a very fast moving leg. Couldn't feel any pain initially, but as soon as I got up (after they had put the anti contraction patch on) my belly felt so tender with some of the worst period like pains ever, that they gave me pethidine, which knocked me out completely. Woke at about 10 had some food and fell asleep again until about two-ish when it was lunch time (my babies seem to know when it is feeding time) had some lunch and went for the scan to check the babies and Both were/are alive! Obviously we have a nervous wait to check them again - I believe my next app is the 29th but I have a cheeky scan booked with my local hospital for tomorrow (25th).

I have also been told that I need to see/keep in contact with my midwife for some strange reason and I have been told that if I can get them far enough along, they could be born in my local hospital. This is still amazingly scary even though the past two meetings with my consultants have been positive. Thanks to hellswelshy, Londonmum123, albaba and twinnies26 for all your info and support as it's been so helpful.

I will keep you posted again as to what it going on as my next app is on the 18th xx

Hi all, my baby boys are 19+2.
I am just going to write what the report says on here but they are stable at the moment and ol still be having weekly care until they can be delivered (preferably not too soon) but all is looking good at the moment even though baby a (smaller) is in only 1cm fluid.

fetal wellbeing scan:
fetus 1
Head circumference -142.0mm
Abdominal circumference - 112.0mm
Femur length - 23mm
Heart action present. Presentation cephalic. Amniotic fluid: reduced. Amniotic fluid index:1.0cm. Placenta anterior high, structure normal.
doppler
Umbilical artery: PI 1.06
Enddiastolic flow: positive

fetus 2
Head circumference - 156.0mm
Abdominal circumference - 139.0mm
Femur length -25.0mm
Heart action present. Present cephalic. Amniotic fluid: normal. Amniotic fluid index: 4.4cm.
Placenta (as above)
doppler
Umbilical artery: PI 1.10
Enddiastolic flow: positive

diagnosis
fetus 1
Selective IUGR. Appropriate growth and normal Doppler.

Both babies have grown along their textiles with twin 1 smaller, measuring below the 3rd centile. Both bladders seen. The liquor remains reduced around twin 1(max. 1cm pool depth). The liquor is normal around twin 2. Both ua Dopplers normal. The limits of ultrasound scanning have been explained. For repeat scan in 1 week including anatomy.

Hope this makes sense for everyone.

twinnies26 Mon 07-May-12 20:45:33

Hi Kate sorry i've not been on this thread in few days - re midwife, after my diagnosis and immediate surgery i never saw a midwife again, i was scanned weekly for the rest of the pregnancy by my consultant and his sonographer. Was essential like for you that dopplers and growth scans were done regularily as things could have turned for the worst at any time.

My girls were both small dt2 1.6 kg (3.6) and dt1 was 1.3kg after birth.Not a huge difference as a result of TTTS, it seems according to my consultant that it continued to affect them both with growth, we were always falling off the growth charts. I bought set of premi vests on ebay last minute and also bought 3tiny premi baby grows from mothercare (but they were way too big). Like Hellw (hi!think we've been on same thread before!) they spent most of their time in incubators in their nappies or then later in only a vest. They only wore tiny grows when they were moved to cots.

Hope your babies will hang in there to 30 weeks plus! Take it day by day, every week you gain is fantastic.

Keep us posted!xxx

Albaba Sat 05-May-12 10:06:48

Hi Kate. I was scanned at first fortnightly then weekly then just before I was admitted to Hospital I was being scanned every day. Twin 2 was still growing but at a minimal amount. Twin 1 was racing ahead and progressing but Twin 2 was only putting on maybe a few ounces between scans. This was my problem that instead of the gap between them getting smaller at each scan it was getting bigger. I was at quite a big risk. Only my DH and parents knew the full story. I used to come home from the Hospital and cry down the phone to my Mum that more things were going wrong. My Consultant was excellent. He spent a lot of time with us and I felt that I was in good hands. I was monitored very closely and he said that he had to weigh up the options and see if the babies stood a better chance being still inside me or being delivered. He told me to expect delivery from 30 weeks so getting to 33 was better than I had thought at the start. There was no chance of me having a natural delivery which I was quite relieved about! On the day of delivery I had a scan about lunchtime, things weren't good and babies delivered a couple of hours later. It all happened so quickly I didn't even have time to panic! You sound like you are in good hands with the Prof. Expect lots of scans. I would imagine that you will also have lots of doppler scans too to measure the flow of blood between your babies. Also there if nothing that you can do to help the situation. I asked I thought maybe If I took certain foods or vitamins this would help but there is no cure for it as such. Good luck and keep us posted.

Hi Albaba sorry to hear that you have been thru this as it is very scary, and im glad to hear that your babies are ok now. There isn't a lot of info about iugr at all(I have been banned from googling about it from my hubby and prof Basky) so living week by week is a bit of a nightmare. Your story sounds so similar to mine. I just hope that my boys can be just as strong. Did your smaller twin always grow or did she sometimes stop, my babes are growing at about the same pace even though there is the size difference. What risk were you put at? Any other information that helped you at all? Sorry for all the questions xx Kate xx

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